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An anonymous reader writes "In Britain, where it is custom and practice to charge around £10 for a copy of your medical results, a patient has discovered that his copy will cost him £2,000 because the records are stored on an obsolete system that the current IT systems cannot access. Can this be good for patient care if no-one can access records dating back from a previous filing system? Perhaps we need to require all current systems to store data in a way that is vendor independent, and DRM-free, too?"

It is amazingly common to have this kind of thing happen. Healthcare is always strapped for cash and they probabily look at the cost of conversion and someone freaked out. To them it made more sense to keep the old equipment with its old data around in case it needed to be accessed. Over time, everyone forgets how it works and then someone actually needs to access it. And ta-da.
Money is a very powerful motivator and to be blunt, the healthcare system in nearly ALL places is so technologically behind, it i

The NHS gets stuck in the middle with the public wanting free healthcare but without paying higher taxes, and with the costs of healthcare increasing due to larger aging population and the higher costs of newer diagnosis/treatments (MRI machines etc). So politicians can never set their budget as high as they want, because to do so they need to put taxes up.

But we at least are all guaranteed free healthcare even if circumstances mean we can't afford to pay

I'd take Britain's system over here in the US where paramedics check to see if you have a valid insurance card before they check your pulse

Saying a thing doesn't make it true.

I've been in the Stanford Hospital ER when my wife delivered.

I say a mother and her son walk in, the boy was literally covered in blood and dripping blood rapidly. They were promptly taken to the secretary where the boy had to wait patiently for the mother to validate health insurance with the nice lady on the other side of the desk.

Then, the hospital lady looked somewhere behind her and made a sign. The paramedics rushed in with a stretcher, got the boy and took care of him. Some cleaning dude came in almost instantly after to mop the blood.

I'm still wondering to this day what would have happened if the mother would have forgotten her insurance papers or anything else. Would they have let the boy die in there? Probably not, but I suspect that it would have been because of the bad PR this could have generated, nothing else.

Hospitals don't have some magic source of money. They are, ultimately, insured by the government against losses incurred treating people who go to the emergency room. Now the trick here is that they aren't owned by the government (as in the NHS system) so their incentive is to get as much money from you, or from the government as possible. In the NHS system their objective is to do find the optimal balance between spending and demonstrable health outcomes.

Hospitals in the US are first and foremost interested in their bottom line. Health is a means to make money like any other business, you want to do it just well enough you can get paid, and you do the minimum required for regulatory compliance. The UK system is fundamentally different, because the owners of the hospital (the public) are also their customers, and politicians like an issue they can get behind in the UK as much as in the US, so if you don't have demonstrable benefit for the cost in the UK you're in trouble. In the US as long as you can get paid for a cost, whether it provides any benefit or not is all that matters.

For those who don't know and are too lazy to RTFA, in American healthcare a hospital may charge uninsured patients upwards of 500x more than they would charge an insured patient for the exact same procedure.

It's an American thing too! People see a huge healthcare bill and assume that the healthcare industry is just rolling in cash, but it's not true. Hospitals in the US are always having to cut corners, technology is out date, etc. Ie, they have to keep the ten year old capital purchases because they cost so much initially and it needs to be amortized, unlike rich corporations which routinely give out new computers every 3 years.

Healthcare is always strapped for cash
Maybe in the U.K., but here in the sates, the healthcare industry is extremely wealthy. They also are extremely cheap. They pay crap wages for IT and will not invest in IT unless absolutely forced to (maybe this is the same in UK). But meanwhile, they are constantly expanding their billion dollar hospitals which all have much nicer furniture, flooring and trim then my house, and of course, they all have to have the absolute latest fad equipment to use on the patients

In a past life I worked as a manager of a college's records department. We were putting all records onto a document imaging system beginning with more current records (paper -> scanner -> DIS) which kept all files current.

There was a legacy storage system (microfiche) which, when someone requested records or when we had spare staff/time, was converted adhoc to the new system. We didn't charge previous students for this service even though it was a huge fucking hassle.

They're also arrogant enough to try and pass the costs on to the customer.
What other industry could ever have the balls to charge a customer more based on a bad decision that the company made? Well, other than the Cell Phone industry, and ISPs, and Banks, and Insurance Companies.

The old system may not have been phased out completely - only phased out for new data. In fact, this is typically what happened with the older systems. Data was stored on MO discs, and stored on yards and yards of shelves. Although the data on the discs is in an open and standard format, the discs are an obscure and obsolete format.

When a new system was installed (which after about 2000 would have been networked with data stored on a large server, rather than individual discs/tapes) it would have been too labour intensive to convert the format - and indeed, the existing equipment may not have supported it, or if it did, it may have required expensive configuration on both the image acquisition device and on the server side (to set up a connection from e.g. a CT scanner to an image server is an expensive process - typically configuring the server's IP address in the "image destination" config on the scanner is a manufacturer service call out - $4k+; and there must be a matching entry on the server with the scanner's IP address - again, software vendor only setup + new image source IP address licence - $5k+).

So, even though the old system has been decommissioned for new use; the discs may still be available, and the workstation still functional, so that the discs can be read and the study examined by a doctor that needs it. However, there may be no way to transfer the data to a new format. E.g. the workstations may not have been fitted with a CD Writer; just the MO drive.

This means that there is no way for the hospital to get the data off an MO disc and onto a contemporary format (like CD or DVD). The only way to do it, would be to acquire an old external SCSI CD-writer compatible with the old workstation (which may be something obscure like a sparcstation or an SGI indigo II) from a specialist IT supplier - or acquire an MO drive which can be connected to a modern workstation with a CD-Writer, or network access (in fact, even that isn't the end of the story, the old equipment may have been unix/linux based, which means the MO discs might be formatted in ext2 - an MO drive on a Windows workstation won't help with that). It is entirely plausible that this is the first request they have had for the data to be migrated to a new format, and that the equipment and configuration needed would have been expensive.

What he's requesting is unnecessary. He wants copies of the images/videos from his cardiac echo from years ago. It's pretty common not to store that kind of data for very long, only the written report (which he already has). I would think these archive copies have been kept (unfortunately) to avoid litigation in case anyone ever makes a complaint. They're unlikely to be of any relevance to his ongoing healthcare, which is why the hospital trust has asked for this money - it's because they would have to

That's more than the statutory maximums in both the Access to Health Records Act 1990 and Data Protection Act 1998 (as amended), which is £50 (if the records are a combination of computer and paper) or £10 (computer only).

This is not legal advice, but it is a recommendation that he should seek legal advice.

Not sure why you are being sarcastic to him, since he's right, it's pretty easy to look up.

It somewhat varies due to different state laws, and the *recommendations* are generally 10 years, but 5-7 is a pretty common *requirement*. Of course that's the minimum, if your doctor/group/HMO doesn't suck I would think they would probably keep more, especially now that things are mostly digital.

Though as far as I can tell none require them to provide the data in any raw format (besides basic imaging/x-rays). An

No, that's up to the medical provider to track. The patient isn't automatically given those records and much of the information in those records is written only for the doctor. That's gotten doctors in trouble over the years having to explain what the various abbreviations are.

Part of what you pay for when you go to the doctor's office is for them to keep records. Few patients are in the position to be able to store the documents, let alone understand what they mean. I'd never go to a doctor who was destroying records after only 7 years.

Then you should stay out of pretty much any clinic in the US. Medical data retention laws are in the book of most, if not all, states. Very, very few clinics keep records longer than necessary. This may change with EHRs since we are finally getting to the point of near universal formats and it's much easier to copy and store digital data as opposed to paper and film, but don't count on it.

I work in medical imaging. When we migrated images to our new system, we went back between 7-8 years for most. We still have the old system running for as requested comparisons, but it is being decommissioned at the end of this month. There are exceptions, and the retention periods vary by state. http://www.xrayfilmsrecycling.com/state-law/ [xrayfilmsrecycling.com]We migrated based on retention rules.

In the UK, 7 years from last modification date is generally regarded as the minimum retention period. Up till now, paper records would be destroyed after this point, due to the cost and space constraints of maintaining them. However, some hospitals would have microfilmed them, or scanned them into a document management system prior to destruction, with retention of the microfilm or digital data for a longer period.

However, although 7 years is the "normal" retention time, there are lots and lots of exception

Had no idea that it became £50, but I am curious on the reaction with such a request and threat of legal action if it's not complied with.

Legal advice is sound advice, It's no more a standard request than requesting a copy of records from any data controller.. their fault for preventing their own access.. time for them (well, the taxpayer in the end, as always) to pay up

>> A statement from the trust (Britain's single payer health care system) said: "The trust does have the visual data on file but the cost of generating an image from what is now obsolete technology is not a cost effective use of public money.

Good thing there's no chance of the US going to a single-payer system...er...am I right?

You've failed to mention that both systems will let folks with cancer die. Socialist medicine has proven to fail (Canada), and the steps we've taken towards it in USA have failed (Obamacare is causing all small and medium sized hospitals to go bankrupt - mine only survived because it is the largest one within a few hundred miles). People will die no matter what - it's just a matter of how much free stuff we give to people who don't work for it before they die. Somebody has to pay for it (before you say "gov

Not sure you can say the Canadian system has "failed". They have had their problems and when there isn't enough government money to go around, their system is terrible. But conversely, when the government is rolling in dough the system works fine.

I suspect the US will have the same experience shortly. But post-Vietnam when has the government had enough money? For a little while during the dot-com boom, I suppose, but not really any other time. So I would expect that if you look at Canada in the 1980s w

The top Canadian tax bracket is 29% federally and between 10% and 21% provincially.

On top of that there are a few employment insurance type things and most provinces have a sales tax but even with everything the top brackets absolutly max out around 60%. And that is before any deductions. In Alberta it maxes out around 45%.

Oh, and don't forget that the government tax load in Canada is more like 70% of your income. That is what it is going to take here as well, if not more. With the local taxes and state taxes added in you may find yourself getting 10% of your gross pay as take-home.

So worst case scenario (where you're making over $150,000/yr in Nova Scotia -- where you can live comfortably on $50,000/yr), you're paying around 36% total in income taxes and 10% sales tax. Most people are paying closer to 28% income tax and 12% sales tax.

Even if you had to pay sales tax on everything you earned/payed out and were the richest Canadian living in the worst possible location, you'd only be paying 60% of your mo

Oh, and don't forget that the government tax load in Canada is more like 70% of your income. That is what it is going to take here as well, if not more. With the local taxes and state taxes added in you may find yourself getting 10% of your gross pay as take-home.

There are many cancers that are treatable or curable. In most of the first world this care is available to all citizens. In the USA if you lack a method of paying for said care you will be given pain killers by an ER doctor and sent home.

I don't think your statement is accurate about uninsured cancer patients. My roommate is a cardiologist (obviously he doesn't treat cancer patients very often but I believe this still applies) and he is adamant that patients in the current system (at least at UCSD medical center in San Diego, a very nice hospital system) receive the same care independent of their insurance status. It may destroy the patients finances and force them into bankruptcy, but not having health insurance doesn't mean hospitals won't treat you. Now if a cancer patient doesn't have insurance, and doesn't want to lose their house for their treatment, they may choose to go the painkiller route (having seen friends and family go through cancer treatment, this is the route I would likely choose), but they can certainly choose to bury themselves in debt before they die if they want too.

I think the "non-treatment" fallacy is a big mis-truth that supporters of public healthcare covet and really don't understand... Just because you don't have insurance doesn't mean you won't be treated for your problem. In my limited experience, the quality of care is more dependent on the facility than whether or not the patent is insured. And in many cases, uninsured patients may actually pay less due to their financial situation than an insured patients pays for a deductible.

Since this post is getting long I might as well say that I think lawyers are the problem, not privatized healthcare. Something like 50% of the private practice expenses go to malpractice insurance, hospitals pay an amazing amount of money towards it as well. Limiting the amount of money people could sue hospitals and doctors for (say $500,000 or something more more reasonable than the current infinity dollars) would go a long way to reducing the cost of health care and insurance. Unfortunately the lawyers that litigate those cases hold a lot of sway in the US political system. They are chomping at the bit to start suing the government backed/regulated/mandated insurance schemes that are coming into effect with obamacare.

Nice start. You lost it at "50% of the private practices expenses go to malpractice insurance". A total overhead of 50% of gross receipts would be an excellent rate of return for a private practice. But that would include ALL overhead - salaries, equipment, real estate and malpractice. Most practices probably run around a 40% ROR - it will vary depending on the specialty and location but it's not all malpractice, not by a long shot.

Nobody really knows how much the American malpractice system costs every

Yes, then instead of someone being forced to actually make a decision and admit that they are actually refusing, he could have had a fun game of "go ask your mother - Go ask your father" where nobody actually acknowledges that they have made a decision in any form.

Are you suggesting that in a system like what we have today, someone would actually spend the $3000+ they're asking to retrieve the records?
I sure wouldn't. I have transferred my records a number of times and have never been charged and would not expect to be charged. That is part of the providers cost of doing business which they generously pad into their care of me.

Andrew Brown, 49, requested a copy of a cardiac ultrasound he had in 2004 at the Worcestershire Royal Hospital.

2004 means nobody can reasonably claim that it's obsolete to the tune of £2000. Dude needs to sue the hospital and the government. This isn't a failing of single payer, it's corruption through and through.

In the US it would have been both beyond any legal requirement to keep records (which is usually 5-7 years) and allowed to charge a fee based on the actual cost of making the copy. So doubly screwed by that amazing private health care system.

Clearly he would have forced to pay even more and the GP would have suggested the guy select a better hospital next time. He would also also stated that you have no right to question what the job creators want to charge for access to your own records.

you don't "select" a hospital in the NHS system you go to your local one or to a specialized one in your trust's area eg i have gone to cambridge for bone density and to Lister to see the nephrologist.

Every old medical system I've seen is stored in some odd format or database. Most smaller clinic don't migrate records because of the insane costs that the vendors want to charge and instead migrate the information over on a client by client basis as they come in the office. If they patient doesn't come in for a number of years the records never get transferred. Since many of these systems cost yearly fees to run, after some point they are just shut off.

I work for a large company that develops medical record database software, so this is kinda my thing.

We refuse to allow even qualified local database/IT consultants touch anything in the database. A single update or delete statement ran on the live database invalidates their support contact if we wish. That's not to say the whole.db file is proprietary, we (begrudgingly) allow third party companies to access the database to pull email/reminder information. Or, in the case of the pharmaceutical companies

The federal government has rules that say for a car to be sold in the US there must be a 10 year committment to supply parts for that car. Funny, but I had a 1998 Dodge Stealth which was actually made by Mitsubishi. In 2001 the antilock brake controller failed and I was told that not only was it a $2900 part but the part was no longer available and they would have to try to find one in a junkyard.

Wrong analogy. The car is the human body, but there is nothing special about the patient's body that is causing the document retrieval fee to be £2,000.00. For your car analogy, it's more like "well, we took a look inside your engine to see what was wrong, and our technician Ted didn't write down what we found. But Ted quit just before lunch and won't tell us what we need to know unless you pay us an additional $100 to get Ted to talk. We could perform the diagnostics all over again, but that woul

So instead of having migration costs, just charge your customers for your migration! Think about it - if you go to the bank, the teller tells you that it will cost you $2,000 to withdraw money because the system in which they store your account info is still on Windows ME! It sounds glorious. I am doing this immediately.

What are the record retention requirements in the UK? These records are from 2004. They'd have been destroyed at this point in Michigan (5 years last I looked). That said, if its within the record retention rules, you'd be a fool not to have them in some accessible format.

But the relevance of a test from eight years ago is approximately zero.

The only possible use of such a test would be to compare it against something current, but likely as not any real relevance would only be obtained if you had tests more frequently to compare against. And still, what does the current doctor want with an eight year old test? Most of the time anything over three or four years old is ignored and new tests are ordered.

That's bizarre. In California I found myself in the ER over a pretty bad infection. I hadn't been in the hospital since I was a little kid (I'm 26 now), so when they were asking for my contact info, they gave me the phone number I had when I was 5 years old and asked if it was correct. After giving them the relevant info, I jokingly asked when my last few visits were for, and they read off 4 entries all dating back to when I was 4 to 8. There were charts and all sorts of stuff attached to my file.

http://www.ico.gov.uk/for_the_public/personal_information.aspxYou have the right to get a copy of the information that is held about you. This is known as a subject access request...Organisations may charge a fee of up to £10 (£2 if it is a request to a credit reference agency for information about your financial standing only).There are special rules that apply to fees for paper based health records (the maximum fee is currently £50) and education records (a sliding scale from £1 to £50 depending on the number of pages provided).

> Do you understand what "DRM" and "DRM-free" would equate to when it comes to your medical records?

There would be some Linux tool that could decode it without being in any sort of legal grey area. I could always be sure that there is a decoder for the data even when the format becomes obsolete. I would not be at the mercy of the clinic or whatever medical device vendor they used.

DRM is a bad thing and should not be used with something as important as medical records.

Tech isn't good or evil, only how it's implemented is.

I recommend putting the management part of DRM in the hands of the patients, not the hospitals.

Encryption however should be used, it should be using open standards. An encrypted text file or similar is far more secure then a DRM encumbered file, how many DRM schemes are there that have been broken?

One could easily argue that encryption is a type of DRM, as it fits the definition.

It should also be easy to move from one encryption standard to the next by simply: decrypt file -> encrypt using new standard.

Sure, assuming the equipment used to encrypt/decrypt is the same, and you have access to the keys, and Jupiter is in alignment with Venus...

Not to say encryption would be a bad thing (it's not), but rather that my experience with American healthcare is that fucking up is pret

You and ultimately only you are responsible for managing your own health. I learned a similar lesson when I left the only copies I had of an expensive MRI of my back, showing my back problems, at a doctor's office, and some time later requested them only to learn that "we threw them out, sorry, nothing we can do". The fact is that nobody is going to care about your own health like you are going to, so if any medical documents are important to you, keep records of them. This is your life, take responsibility for it.. it sucks, but he really should have made copies when it was still in an easily accessible format. I know, 20/20 hindsight. Young 'uns, learn from the mistakes of others.

Using force to compel every doctor or hospital to keep every record ever in a conveniently accessible way would be ridiculous, it's not only immoral, it would cause already overpriced healthcare to dramatically rise further in price, and we'd all have to pay higher costs so that all the doctors and hospitals could keep records that aren't actually important or will never be accessed.

Sure, if you're the only patient the hospital has. The storage of the records is probably not as significant as the organizing and retrievability of specific records for specific patients in a system with thousands or hundreds of thousands of patients.

I mean, apparently, based on your previous comments, your standard is "never 'let' anyone with cancer die", which is, unfortunately, an impossible standard and would thus be immoral to try to enforce. Depending on the penalties for failure, you'd have a mass exodus from the field of oncology and nobody with cancer would be able to get treatment. Kinda like the high price of malpractice insurance limiting the availability of OBs.

That's the thing about healthcare, you may not realize you have something someone else really REALLY needs, until its too late.

I dont see whats 'immoral' about holding doctors to the same standard as i'd hold to an accountant, frankly. If anything they should be held to a higher standard, if thats something they cant handle, then maybe they shouldn't be doctors.

That said, you'd think they'd be the first folks on the front lines demanding things like open formats, to make this stuff easier for them. That w

That's ridiculous - why don't they have a computer and software left over from the old system that can access this data? Did somebody just not think and throw that out in their last device refresh?

The NHS made the right choice selecting a standards-compliant EHR system for their recent changeover. Adhering to industry standards like HL7 will ensure that this problem will never happen with the new system they have in place.

The records are longer than the legal maximum retention period. You can't expect hospitals to keep every X-Ray you ever had forever, not only is there privacy issues (some people don't like the idea) the cost of unlimited data retention is enormous. He should have requested it while it was still within the legal time for it to be kept, otherwise anything more is just a favour to him that they can get it to him at all even with the fee, because it costs money to bring an obsolete system back online, as it wa

Why should he have to pay more because his files are on an old computer system. For instance you don't pay your IT guy more when he puts a file on an old system and can't get it off. Now I know this is an old system but still someone must be able to go in and get it.

Let me preface this by saying I'm a medical practitioner, and I read the story
He has a written report of he cardiac ultrasound, and he has a written report of it. The data he wants are the 'still images' of his ultrasound. An ultrasound is a live, dynamic test that looks at the heart as it moves, its not like an xray or CT where a single image gives you the data you want. While single images are often recorded (mostly medico-legially I believe), at the end of the day, he wants to compare some still images from his cardiac ultrasound taken 10 years ago to the images taken recently. Not worth doing, exceeding rare that 'any' useful comparison could be made.
I agree there is no need to store TB's of data for ultrasounds, though the fact that they still have it is interesting in itself!